Corks&Kegs for CF

Saturday, November 3, 2018 at 6:00 PM

About CFF

Mission Statement: The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to live full, productive lives by funding research and development, promoting individualized treatment and ensuring access to high-quality, specialized care.

About the Cystic Fibrosis Foundation:
Founded in 1955, the Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis. The Foundation was started by parents desperate to save their children’s lives. Their relentless and impassioned determination to prolong life has resulted in tremendous strides over the past 60 years in accelerating innovative research and drug development, as well as advancing care and advocacy. Virtually every approved cystic fibrosis drug therapy available now was made possible because of the Foundation and its supporters. Still, we believe no one should have to die at a young age.We will not rest until we have a cure for all people living with CF.

About Cystic Fibrosis:
Cystic fibrosis is a rare, genetic, life-shortening disease that affects every organ in the body and makes breathing difficult. Some people with the disease say it’s like breathing through a narrow straw. In people with CF, a defective gene causes a thick buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria, leading to life-threatening lung infections. Sixty years ago, most children did not live long enough to attend elementary school, but thanks to Foundation-based research and care, the median survival age of people with CF is now about 40.

Why Support the Foundation:
Many people with CF are living long enough to realize their dreams of attending college, pursuing careers, getting married, and having children. This is due in large part to the work of the Foundation and the amazing CF community. We helped discover the gene that causes CF, created a state-of-the-art model for CF care, and have funded groundbreaking research. But we’re not done. We are working every day to build on this incredible momentum, and we won’t stop until there is a cure for all people living with CF.

Research Advances:
Drugs that treat the genetic cause of CF are rapidly becoming available to more individuals as a result of the Foundation’s efforts. There are now two FDA-approved therapies that treat the basic defect in cystic fibrosis for more than half of the population. Perhaps most exciting, more and more people will be helped by these treatments in coming years. In fact, by 2026, we expect that close to 95 percent of people with CF will benefit from similar drugs.

One Time Cure:
We don’t just want to treat CF. We want to end CF – for everyone, including those with rare or nonsense mutations. To bring that vision to life, we are focused on a very high-tech and experimental process called gene editing. Gene editing will remove the genetic mutation that causes CF and replace it with a normal sequence of DNA. Research into using gene editing to cure CF is already underway. Although there are many hurdles, with time and continued effort, we believe we will see a permanent, one-time cure in our lifetimes.

Better Todays:
In addition to adding tomorrows by pursuing innovative treatments, we’re also committed to helping people with CF live the best lives that they can today. Along with new therapies and a one-time cure, we’re still steadfast in our efforts to develop treatments that address the symptoms of CF. We are continuing to invest in CF care by increasing our support for the 120 centers in our innovative care network, with a focus on adult care and mental health. And we’re actively focused on lung transplant initiatives for the many adults with CF who need them. We are enabling efforts by and for people with CF. And we’re working diligently in the policy arena to ensure that people with CF have access to the care they need. In addition, CF Foundation Compass, exists to help people with CF and their families with insurance, financial, legal and other complex issues they are facing.

Important Note on Attendance at Foundation Events:
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function. To further help reduce the risk of cross-infection, the Foundation’s attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.

Please note: People with CF and their families should be aware that individuals with CF might choose to attend Foundation events or meetings without notifying event organizers. We strongly discourage this; however, we cannot guarantee that only one person with CF will be present at any indoor Foundation event. For more information, please call your local chapter.